Dear Addie,
I remember the day you were born as if it were yesterday. It happened so quickly, and you were remarkably calm. You didn’t cry; instead, you just looked at us with your eyes wide open, as if you couldn’t wait to put a face to our voices and see what this world looked like. It was different from my previous experiences with your newborn siblings, but I certainly wasn't going to question a dose of calm in my life.
As the years passed, the moment of your birth remained vivid in our minds. You were calm and observant. As you grew, you excelled in certain areas of development, crying only when you truly needed something you couldn't obtain yourself. Little did we know that your quietness would lead us on a journey that, would take us down uncharted paths, often feeling like being stuck in a hamster wheel of hope. It is a wheel filled with exhausting research, doctor appointments, specialists, guilt, and battles over who is right or who knows best. Unfortunately, there is no way to get off. Your legs will grow tired, but the wheel keeps spinning.
Yesterday, I spent over two and a half hours on the phone with the insurance company, desperately trying to find hope amid the confusion of the wheel I was on. I spoke with person after person, each offering new and discouraging information. Every conversation felt like I was purposefully being sent to navigate a maze filled with closed doors—doors that remained shut for various reasons, depending on whom I talked to. I've been trying to get these doors opened since October, even though mind you, they were once accessible to us. Somewhere along the line, someone that has never met us probably sitting in a highrise office building behind a desk decided they knew better for you. They kindly offered me the option to step off the wheel, but it would be replaced with jumping through hoops instead. As frustrating as it sounds, they are shockingly allowed to do that and that is deeply saddening.
Addie, one of the most heartbreaking parts of this journey for parents is convincing people—like insurance companies—who are supposed to help us, that you are more than just a case number. You are a person, my child, my heart, living, walking, and breathing outside of my body.
Yesterday felt incredibly defeating, but what those people who think they knew better for you don’t know is giving up is not part of who I am.
Addie, you keep doing amazing things, baby girl. I'm going to grab some water and keep running.
I love you beyond measure.
Mom
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